MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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tcell's picture
Replies 1
Last reply 4/24/2014 - 4:13pm
Replies by: tcell

http://cancerdecisions.com/index.php?main_page=product_info&cPath=86&products_id=412&zenid=b2f8ef42bba6e474764c79d58e393cf3

Does anybody know if this is worth almost 300 bucks for the download version? Is it up to date? Is there sufficient information in there about alternative treatments, etc???

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minerva's picture
Replies 4
Last reply 4/24/2014 - 4:18pm
Replies by: robertgbirch, minerva, Janner, Anonymous
Hi there,
 
First, I apologize for my English, I'm not a native speaker. 
 
In 2012, my husband's birthmark on his upper chest began getting darker, growing and itching. After a couple of months he saw a dermatologist who realized it was melanoma at first sight. According to the path report, it was a 0.93 mm, Clark IV, superficial melanoma with no ulceration, no regression but 2-3 of mitotic rate. We were leaded to see a surgeon for WLE and SLNB. The surgeon told that she found the path report contradictory especially because of the Clark's Level. So she sent the samples - as 3 prepared lamels - to another laboratory which is specialized in melanoma. The second report came as Clark II with no ulceration, no mitosis but with regression. Also there were some other differences like the growth phase. The first report said it was vertical but the second one said it was radial. The surgeon told that the second report was better but also WLE and SLNB was still necessary so they had been done. Thank God, they were all clear. From that time my husband has been visiting an oncologist every six months for physical examination, blood work and x-ray. Also he sees a dermatologist every six months for skin and mole check. 
 
After the first shock I started researching and realized that mitotic rate is significant for stage 1 patients' prognosis. But as I told above, we have 2 path reports and I intend to believe the second one but how can they be so different from each other? I read that Clark's Level depends on the specialist's interpretation so that's ok, but how can the calculation of mitosis or determination of regression or the growth phase be different? I'm obsessed with these questions, I guess I want to believe the second report certainly although regression is in there. And I know nothing is certain especially in melanoma but still does anyone have a similiar experience like this? 

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I was diagnosed stage IIIC in December.  I had a WLE and then a radical neck dissection in December at Vanderbilt Hospital.  I am now in the E1609 clinical trial.  I am in Arm A, so I receive 10mg/kg of ipi.  I just finished the induction phase, so I had a PET scan on Friday.  I am a little confused about what the radiologist put in the report, so I thought I'd ask you guys what you thought.  :)

 

HEAD AND NECK:  Right periauricular soft tissue thickening has nearly resolved.  There is a 1.3 cm round soft tissue density posterior medial to the right parotid tip demonstrates mild SUV uptake of 3.1, possibly reprsenting a metastatic lymph node.  There are two hypermetabolic left level II lymph nodes measuring 7mm and 11mm in short axis on image 83 and 91.  SUV measures 3.1 and 6.1 respectively.  These lymph nodes were present on the previous exam measuring 5mm and 9mm with SUV value of 3.  THere is also a mildly hypermetabolic stable 4mm lymph node in the left posterior cervical triangle on image 101 without significant change.

 

My doctor has ordered more scans in 6 weeks.  My husband was there during the appointment and he got the impression that there wasn't really anything to be concerned about.  I got the opposite impression.  :)  Here's where I am confused..  when I had the radical neck dissection, I thought that all of my lymph nodes were removed?  So how are they seeing ANY lymph nodes on the right side?

 

Thanks in advance for any insight or advice!

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 2
Last reply 4/24/2014 - 9:11am
Replies by: Janner, Anonymous

I've had melanoma stage Ia and since I have a lot of dysplastic moles, I'm worried I will get a new primary melanoma. I know all about the ABCD(E), but how do I check and possibly notice a difference when there are so many places to look?

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Anonymous's picture
Replies 2
Last reply 4/24/2014 - 8:18am
Replies by: Anonymous

Hi there,

First of all, English is not my native language, so please don't be distracted by my use of the language.

In 2013 I had a mole removed that had changed color on my right upper leg (<5 millimeters). My family doctor told me it was melanoma in situ, and told me that I needed to have a re-excision in hospital, because the cancerous tissue was too close to the border of the biopt. In the operating room however, I saw that someone had written 'stage I' on my chart. The surgeon told me she presumed it was stage I.

After a few excruciating weeks of waiting I got a good result back: there was no longer any evidence of malignancy found in the skin they removed during the surgery.  

Now, I'm at a point where I am trying to move on with my life. I'm finding this very hard, being worried a lot and always checking my skin and wondering if I am being alert or hypochondric about is. I also asked for the pathology report of the first mole removal, because I wish to understand what stage my melanoma was in.

The conclusion said that the pattern of melanocytic cells they saw in my skin was mostly something that would fit a melanoma in situ, however there was a focal laesion of 0,3 mm that was 'strongly suspect for beginning invasive growth'.

I keep wondering if the 0,3 mm is the Breslow thickness and if suspect means inconclusive or if it is just a eufemism for 'it is melanoma stage I'?

Can anyone help me?

It may seem arbitrary, but I can't seem to let this go, it is important to me.

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/24/2014 - 5:35am
Replies by: Anonymous

I woke up this morning and my entire right leg was throbbing, its the same leg that has the lump in the crease of my leg, as I mentioned before. So I went to work since today was an important day for me to be there, I ended up leaving around 4 cause the pain became to intense. This morning I checked the lump again with mirror and it is no longer the complexion I am which is fair skinned, it has actually turning to a darker shade grey, so with the pain in my leg, I left work and went to the ER. I explained why I brought myself there, when I was brought back and the nurse practitioner came in and looked at the lump and the black spot on my labia, this was her explanation 1. The lump is an from an in growing hair due to shaving, I looked at her and said, how is that possible when I found this lump before I shaved and I hadn't shaven all winter. No response from her 2. The black spot on the labia is a vein. I said that it wasn't there when I first noticed the lump. Still no response from her. She handed me a script for an antibiotic and said its an abscess. I said the lump doesn't not hurt, its not inflamed. Why does my leg throbb, all she said its an abscess and if the antibiotic doesn't work go see your physician, I would waited if my leg wasn't hurting. So now I am home, Should a second opinion be smart?

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BostonTerrierFan's picture
Replies 2
Last reply 4/23/2014 - 7:52pm
Replies by: Ginger8888

I am 33 years old, & I was recently diagnosed with stage 3a melanoma. I underwent a wide local excision with sentinel lobe biopsy, followed by a whole lobe dissection. My initial PET scan following the dissection showed "hot spots" across my neck &shoulders, but they think it was tension from me guarding the JP drain (I struggled with dealing with it quite a bit). I am scheduled to have my PICC line inserted in the morning, and I start Interferon-a infusions on Monday. The side effects sound pretty rough, & I was hoping for advice on making the best of it. Also, is the PICC line uncomfortable or difficult to deal with? Thanks for any advice you can offer!

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gaby's picture
Replies 2
Last reply 4/24/2014 - 12:54pm
Replies by: arthurjedi007, Kim K

hi everybody, thank you very much for reading me. I need your help.

My husband is stage IIIa from june 2012 . He is  with  treatment of interferon pegylado (intron) from October 2012. My husband is now 40 years old, he  has its scan every 6 months and blood checks , the last scan showed enlarged lymph then made ​​a PET_CT.

The PET showed some hot spots in the enlarged nodes SUV 2.5 do not know if it's the inflammatory effect of interferon or recurrence of melanoma. At the end of this month to repeat the PET.  Next week  he will  PET-CT. This PET is very important because the pet will determine if are melanoma  recurrence or not.

I am very nervous and not deal with the PET result. We also tried several years ago to have a child, and right now I'm just waiting for the result of my second FIV-ICSI, and I should be quiet but I can not. We  have many misfortunes at this time I no longer feel I have more forces ...

appreciate any advice to confront the report of the PET.

Regards

Gaby (from argentina)

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/23/2014 - 4:04pm
Replies by: Anonymous, kpcollins31, Julie in SoCal

I keep reading lots of articles that say now is the best time to get melanoma. However I don't understand that cos there is no cure. Could someone please explain?

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mark1101's picture
Replies 3
Last reply 4/24/2014 - 3:30am
Replies by: Dick_K, paul, ad2424

I have tried Zelboraf at full dose two times and both times I have hit the wall with regard to joint pain around 6 or 7 days in.  Doctor's solution is to suspend the drug for 3 or 4 days and then restart.  Is there a better alternative to dealing with this pain?

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Julie in SoCal's picture
Replies 9
Last reply 4/23/2014 - 9:30pm
Replies by: Julie in SoCal, Anonymous, Mat

Hi friends!

Just wanted to give you a quick update in what's going on with me.  I'm stage 3c with intransit mets near my SNB scar.  I've now had all 4 Ipi infusions and tollerated them reasonably  well (though toward the end they were starting to kick my butt and so I was on a short steroid course).  

Three weeks ago I had my first post-ipi scan, and it showed that I have no new mets.  So I  have stable disease.  However, in the last 3 weeks I think I've had more intransit mets popup.  It's tough to say because these new ones are still small, but they itch like crazy.  

So here's my question:  How long does it take for ipi to kick in?  I'm 5 weeks out from my last infusion.  Shouldn't I be seeing my intransits melt away by now if it was working?  

Thanks for sharing your insight and experiences!

Blessings

Julie

2009 Stage 3a, primary on hand, WLE & SNB (twice), LND, HD-INF, GM-CSF

2014 Stage 3c imultiple ntransit mets near SNB and WLE scar. 

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I haven't been on here in a while, but I wanted to stop by and let you all know how I'm doing. You have all been so great and uplifting to me, and really helped me through so far. I was induced on March 13th, and gave birth to a beautiful, healthy baby girl. I was very happy to meet her, although melanoma loomed in the back of my mind the whole time. On March 21st, I had PET/CT scans done, and got the call on March 24th that they were all clear! Right in time for my Fiance's birthday on the 25th, so we went out to eat and celebrated both the good news, and his 26th birthday. It was a very good night. But I knew I had to have the lymph node dissection done still, since one node had micromets found after SNLB. I had this surgery on April 2nd. WOW...I did NOT expect that much pain. The groin area is NOT a place you wanna have surgery...and I guess the fact that I had the surgery about 2 weeks after delivering my baby made it even harder to recover. I spent one night in the hospital and am still recovering at home. I did develop a very nasty staff infection 2 weeks after surgery, which landed me back in the hospital, and then at my oncologist's office every day for a week for IV antibiotics. It's all cleared up now. So far, very little swelling/lymphedema. I actually ONLY get it when I wear my compression stocking. Weird...also, the rest of the lymph nodes taken were ALL CLEAR!!! This was the first time I could really breathe in months. It was a wonderful moment. I do know that I always have to look out for melanoma now though, for the rest of my life. But I am hopeful that I will beat the beast. This has by far been the hardest journey of my life, and I want to bring love and support to anyone else out there who is also battling this. ESPECIALLY if you are diagnosed while pregnant. I never, ever want anyone to deal with that awful awful stress. The stress from a melanoma diagnosis ALONE is enough to just drive you insane, add a melanoma diagnosis during pregnancy...I cannot even describe the despair I felt. I am doing so much better now, and I start Interferon on Monday, April 28th. I know it will be a VERY tough road, but I'm ready.

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I don't know about you but when I read articles like this I feel I could read the same within 5 years from now for advanecd Melanoma:

http://www.theguardian.com/society/2014/apr/16/patients-end-stage-liver-disease-hepatitis-c-new-drug

It seems that all of a sudden they were able to cure 90% of all patients suffering from this desease. I am happy for those patients and hope the same for people suffering from advanced melanoma (knowing that of course on the level of molecular biology this in not comparable at all).

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Ginger8888's picture
Replies 2
Last reply 4/23/2014 - 5:30pm
Replies by: Ginger8888, Kelly Smith

Hi everyone, i'm Ginger and i'm newly diagnosed with stage 3 C melanoma ..Here is a  little bit of my story..I'm hoping to learn some things from you guys and what you've been through..

I had a mole removed in Jan of 2014 by Michelle Palazzo and was diagnosed with stage 3 C melanoma 10 mm with lymph nodes involved..I underwent a neck dissection by Dr. William Wooden from Indiana University Hospital in Feb 2014 and the melanoma had wrapped around nerves and muscles in my neck..Surgeon said each node involved had 33 fingers of cancer coming off each one..He was shocked.He referred me to Leslie Fecher a melanoma specialist also from Indiana University Hospital.I am currently on my 3 rd week of the high dose interferon IV under the care of Dr Mian Mushtaq in Jeffersonville Indiana Norton Cancer Center(transfered treatment closer to home )and am not having hardly any side effects, i'm a little tired but that's about it..I will be doing the shots 3 times a wk for 11 months and possible radiation...I had a CT scan ran two wks ago and it came out fine..I'm hoping the shots are as easy as the 30 day treatment.,

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